To be so frustrated with referral process

[Ezlo]

My ferritin came back as 5, which means I'm very anaemic. I get incredibly breathless and can barely function anymore and this is affecting me on a daily basis.

After my blood results came back I asked the GP to to refer me to the clinic for an iron transfusion as I don't tolerate iron tablets well at all. He agreed to put an urgent referral in but explained that it would have to go through the department I've had surgery with recently, gynaecology. My GP was happy to do this. He put that referral through a month ago. Meanwhile I'm literally feeling like I'm on the cusp of having a heart attack if I walk 250 metres. I've tried chasing it with the GP surgery and the very helpful receptionist chased it with the head nurse at the gynaecology department, but I've heard nothing back. I can't find any contact details for the nurse at the gynae department neither so I'm stumped and poorly. Is there anything else I can do?

I'm sorry to hear this. Please go back to your GP and pester them. Sometimes they won't do anything until you keep on with them.

I've been through similar, very low ferritin and lots of symptoms. I ended up paying for an infusion privately due to being messed about by the NHS. It's really frustrating and an example of women's health not being taken seriously IMO. Sorry you're going through this.

Have you tried different types of iron tablets? I asked for alternatives and eventually settled on ferrous fumarate which doesn't seem to have the same side effects for me

Thank you, I will keep on at them. It feels like there is no joint up care.

I'm sorry to hear you've been through the same. It's horrible both with feeling ill and feeling that as a woman, we're not taken seriously. I hope you're feeling much better now.

They can't do anything to make secondary care action this any faster. It already sounds like they have tried.

Hi @Dramatic. I wasn't aware there were different types. It's the ferrous fumerate that makes me vomit and gives me stomach cramps. Are other strong iron tablets available without prescription do you know? I'll do some research. Thank you.

It sounds very frustrating, but what are you doing yourself to get your iron levels up in the meantime?

You've said your ferritin level but not your haemoglobin level? If your haemoglobin is normal they are vanishingly unlikely to infuse you and would not describe you as anaemic.

I called the blood department direct to push for my appointment to come sooner and it worked...so possibly worth trying

It is incredibly frustrating, I feel your pain. I have anaemia and do not tolerate iron tablets well. Doesn't matter if I take them with food or with orange juice they make me feel incredibly sick and difficult to go the toilet.

I've tried spatone and iron vits but I'd have to have quite a few of them a day to equal the same amount of iron that's prescribed in the tablets.

I hope you get sorted soon

I'm going through the same. A decade of iron tablets, tranexamic acid for heavy periods, then it got worse not better. I've now had a colonoscopy and gastroscopy which were normal, and I got a letter sayin "We are pleased to tell you there is no cause for your anaemia." Well I wasn't pleased! Now I am doing ANOTHER 6 months of iron tablets before I can have another referral to haematology. I may pay for a private infusion.

My DD’s was 8 when she was 13 and they just put her on iron tablets. I couldn’t pay privately for a transfusion as they wouldn’t accept under 16. She ended up with a blood transfusion after her first period wouldn’t stop (28 days and 3 types of meds to finally stop it). Ended up very unwell. Her ferritin is still only 30 odd and now she has started on B12 injections as that’s low, and folate. Thinking of paying for a transfusion as doubt NHS will give her one. She is coming up 17 now and has no energy, sleeping after school, no social life. Something is wrong as she’s not absorbing vitamins. She has been referred somewhere and GP has reached out to a haematologist this week for advice. I think the only answer is putting pressure or paying privately if an option. It really is horrible.

Can you ask for iron liquid for now and ask GP to chase hospital.

I have regular iron infusions and blood transfusions when required. I live with ferritin in single figures. I have an open referral to a unit when I have my bloods done every twelve weeks.
They only act when my Haemoglobin drops. And won't even consider low ferritin.

@Ezlo
I understand the frustration, but assuming the referral has been indeed been accepted by gynae I suspect the issue is simply waiting times are lengthy. In our area waiting times are soaring in nearly every single specialty. It’s quite possibly nothing to do with the fact you are a woman and so your health needs being ignored, but totally down to long waiting times. By all means follow it up with your GP, but in all honesty they may be able to do nothing about where you are on the waiting list.

Everywhere does it slightly differently, but in our area the majority of our out-patient iron infusion are done in the clinical investigation and treatment unit. Every specialty can refer in to that unit. Waiting times are for the unit, not the specialty. They are triaged by clinical need. So, the most anaemic ( lowest Hb, not just based on iron levels), reason for anaemia , factors such as cause, degree of symptoms or if the patient is being optimised prior to urgent/essential surgery but not for transfusion are all taken into account. Also, the reason for being able to take/suitable for oral iron replacement can play a role. Having side-effects -such as constipation- which could potentially be managed or alleviated to some degree will put you further down the priority list than someone who is allergic to a constituent or for whom side-effects are not going to be manageable (patients with inflammatory bowel disease, for example).

I do understand how frustrating it is to wait, especially when you feel unwell. We don’t like running the service this way either but we are being forced to make tough choices with regards to clinical priority right now. It’s not the service any of us want to deliver. But it is where we are right now.

The GP can't make them see you sooner unfortunately , you'd be better off phoning the appointments dept at the hospital. Try iron spray from better you it hit my levels up pretty quick. Hope you get sorted

I had to pay for a private infusion. Was worth every penny - was advised would last 5 years.
this was back in May. Just had a letter come through with an initial consultation with NHS for this!